Anaesthesia and Intensive Care (AIC) is an Australian medical journal. The latest issue, just published online, contains a remarkable – and possibly even unique – pair of Letters. These letters take the form of apologies for the distress caused by the publication of an article – I do not know of any similar cases in science.

Simpson and Van described the medical aspects of the death of a 6-year old boy, who suffered a serious adverse reaction to an anaesthetic. The boy had Duchenne Muscular Dystrophy (DMD), a genetic condition that causes progressive muscle degeneration. Victims, who are usually boys, rarely live past their twenties.

People with DMD are known to be at risk of dangerous reactions to certain anaesthetics – namely, anaesthetic gases (inhalants). The boy in the case report was brought into hospital with a dog bite. Simpson and Van explain that the wound had to be treated, but this would be painful and only possible under anaesthetic. Simpson and Van wrote that they tried to administer injected (IV) anaesthetics, which are safer than inhalants in DMD. However, they could not do this, because the boy was “uncooperative” (a word they use five times in all).

Therefore, ‘with parental consent’, they decided to take the risk of using inhalants. They note that the patient had already been given inhalational anaesthesia three times between the ages of 1 and 4, with no problems. Unfortunately, the boy suffered a dangerous reaction to the anaesthetic (rhabdomyolysis), and died despite urgent efforts to save him.

Clearly, this is a tragic story, but medical case reports often are. Publishing them nonetheless serves an important function, helping to better inform doctors and improve future care. So why did the journal apologize? The editor, Neville Gibbs, explains: (emphasis mine)

Anaesthesia and Intensive Care would like to apologise unreservedly for the recent publication of [the piece]. This apology is to the parents and other family members of the patient. We now recognise that the contents of the letter and the circumstances in which it has been published have caused considerable distress. This is primarily because the contents gave an incorrect impression of several aspects of the patient’s presentation.

The parents report that the child was no more uncooperative than any other six-year-old faced with an unexpected surgical procedure […] and that he had not had previous anaesthetics between the ages of one and four years for tonsillectomy or grommets. They do not recall any attempt at intravenous cannulation prior to the procedure. They report that he was emotional prior to the induction of anaesthesia, but this was understandable given the way he was managed.

They have indicated that they did not give consent to the publication of the letter specifically, only to the communication of information to other doctors, and certainly not in the form that was published. We accept that the distress we have caused is irreparable, but hope that this apology will reduce any ongoing distress.

There are some factual claims – that the boy had not been given anaesthetics for two procedures between the ages of 1 and 4, as Simpson and Van said (and which might provide reassurance that his body was able to tolerate it).

The parents also say that they “do not recall” the doctors attempting to insert an IV cannula to give injectable anaesthetics – which seems to be an allegation that Simpson and Van in fact made no attempt to use the safer IV procedure before moving ahead with the risky inhalational one.

Finally, the parents dispute the judgement their son was especially “uncooperative”. Remember that in the original paper, this word was used five times in all. I can see why that would be distressing – it could be read to imply that the boy, rather than his doctors, was responsible for the use of the gas that killed him.

Simpson and Van also write an apology‘for any distress’, but it concedes little ground. Here it is in full:

We offer an unreserved apology, particularly to the patient’s family, for any distress that has been created over the publication. The intention of our letter was always to inform the anaesthetic community in order that others may avoid a similar occurrence in the future. We understood his death to be a major event in a relatively small community and, thus, it was likely his identity may be guessed by some readers. This was taken into account when considering publication. We, therefore, took great care to try to protect the patient’s identity and to try to report the facts in an objective and non-judgmental manner. Any wording in the letter that caused offence or distress to family members by appearing judgmental is deeply regretted.

Doesn’t sound like the paper needs to be retracted, but rather the course of action of the doctors needs to be investigated.

http://blogs.discovermagazine.com/neuroskeptic/ Neuroskeptic

I’m not sure about the paper. If the parents are right that the boy had not had inhalational anaesthetics in the way described in the paper (it’s not clear whether the parents are saying he had never had any, or that he only had it once) then this would mean that the case report contained a significant inaccuracy and ought to be corrected, at least.

RogerSweeny

Yeah, the problem isn’t distress. The problem is inaccuracy. If it is inaccurate, bad, bad, bad–and a retraction is in order. The writers and the parents sure seem to be disagreeing about important facts.

“It is therefore almost always necessary to obtain written informed consent for publication from people who might recognise themselves or be identified by others (e.g. from case reports or photographs). It may be possible to publish individual information without explicit consent if public interest considerations outweigh possible harms, it is impossible to obtain consent and a reasonable individual would be unlikely to object to publication.”

It seems that there was no consent for publication here. Just saying ‘We’d like to share with other doctors, are you ok with it?’ isn’t enough. And as for the second part of COPE recommendation – it doesn’t look like the conditions for the publication without consent were met: because the parents very likely would object to this publication – in fact they did afterwards, didn’t they?; also, it was possible to obtain their consent. Finally, I’m not sure if reporting that the kid who because of his condition is likely to be susceptible to gaseous anaesthetics is indeed susceptible to them is of major public interest.

So I can see how this could be easily retracted on the ethical grounds (because yes, inaccuracy isn’t the only valid reason for retraction).

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